Wednesday, May 29, 2013

For this girl

Day after tomorrow I fly to San Diego to the American Humanist Association national conference. I'll be part of  the Richard Dawkins Foundation for Reason and Science panel discussing  "How Religious Fundamentalism Harms Children." 

The others on the panel are Sean Faircloth, Janet Heimlich and Katherine Stewart, all amazing writers and advocates for the separation of church and state, especially when it comes to child medical maltreatment and proselytizing in school. Richard Dawkins will moderate.

It's an incredible honor and opportunity to have been invited to join them. It's a chance to literally speak for kids who have no voice against the pain and shame that can result from  the behavior of their indoctrinated parents. The recent case of a Pennsylvania couple charged with the death of a second of their children from choosing to pray rather than seek medical treatment--in other words, fatal neglect--has brought the issue front and center again. I hate that this is what it takes. But we have to keep talking. We need to educate the public and get the state religious exemptions from medical treatment changed.

I survived untreated osteomyelitis at thirteen (and fourteen and fifteen) because my Christian Science parents and practitioner chose "spiritual treatment" for me.  I lost the use of my knee forever during those years, and six years ago I had my leg amputated when it jeopardized my health. No surgeons were willing to attempt replacing the fused joint. One said he never saw cases like this except in elderly patients who'd had the disease before antibiotics were available. 

But my fused, scarred, bent and eventually amputated leg is just part of the fallout. My life changed from one day to the next when I was thirteen. Not long after my fourteenth birthday, I was in too much pain to get out of bed--for ten solid months. My leg ran with pus day and night. The pain drove me to the point, one summer night, where the only thing I wanted was to die. But again, I had no choice. I lived. And, as happens in post-traumatic stress disorder, my brain changed its own chemistry. It warped into a state to attempt to manage my unreasonable situation, just as it would in battle or as a prisoner of war. These changes are visible on brain scans of people with PTSD. 

But for twenty years more, I just thought I was crazy. My moods could plunge without warning into suicidal despair. My whole being thrummed with anxiety almost 24/7. I lived in fear. I was terrible at showing up on time in a schedule for school, for a job. The only routine that soothed me was taking care of my horses. By the time I was in my thirties, having flashbacks and attacks of claustrophobia that prevented me from working, I really believed I was insane. Being diagnosed with PTSD and learning to manage it have changed my life.

What you need to understand is that part of me never got out of that room. Like a political prisoner, the mattress--the small room--the walls are still under and around me. Right now I'm keyed up in an excited way about this trip, but it reminds me of the stress I lived with  for decades. And it brings the resonance of that fourteen-year-old girl closer.

The hardest thing I've had to come to terms with about that time is her innocence. The most difficult memories are the ones of being in bed only being able to lie on my back or left side, never moving my leg, unable to stand the slightest jiggling of the mattress--and yet being sure I would be healed. The days grew long and hot, the leaves of the hickory outside shaded my window. I could smell the fresh-cut grass and hear my friends outside. All I needed was to have that single moment of understanding, enlightenment that would let me wake from the mortal dream of having an infected leg. I would sit up; the bandages would drop from my leg; I'd stand up and feel the rug under my bare feet. Then I'd run all the way to the barn and hug my horse. I could imagine it vividly. It was just out of reach.

It never happened. I survived and that girl faded into cynicism and shame. She was angry and confused, imploding rather than exploding, for the next twenty years.

How many kids experience that transformation to a greater or lesser extent? Maybe not in similar conditions physically, but emotionally? Refusing to validate a child's understanding of the world--of pain or health--of her personal realm of a body--derails any hope of a normal transition  to adulthood.

I'm able to speak in San Diego because my own daughters have taught me I deserve unconditional love and freedom from pain as much as they do.

I'm going to speak for the girl I was at fourteen, the girl in bed who desperately tried to scrape up a miracle that adults brutally, ignorantly told her was within reach. It's an honor to be asked. It's a tribute to her human grit, the will to live that kept her alive when she was denied any reasonable alternative.

This was the single time a picture was taken of me in bed in 1976. Yes, that's a pet mouse on my hat. Cheers, Liz.

See you on the flip side.  

Wednesday, May 8, 2013

Shopping with Liz: Dress For Success!

"Beware of all enterprises that require new clothes."  Part of a quote by Thoreau, a fellow who probably dressed the way I have all my life. I've found that horsemen and writers can mostly get by in jeans & T-shirts. Although this was not true when I was in England: I taught, rode, even cleaned stalls wearing  breeches, boots, shirt, tie & sweater or jacket.

(Thoreau trivia: Having grown up in Lexington, Massachusetts, as a kid I swam at Walden pond. I remember it not as Henry David's inspirational hangout but a nice swimming spot remarkable for the crayfish we used to catch . This will be a bonus point on the final.)

The countdown is on for my trip to San Diego at the end of this month: the American Humanist Association's national conference. I'll be part of a panel from the Richard Dawkins Foundation for Reason and Science along with Janet Heimlich, Katherine Stewart and Sean Faircloth, moderated by Richard Dawkins himself. Talk about your enterprises requiring new clothes...

My daughters bailed like rats fleeing a sinking ship. Twenty-three said, "I think you need to find someone closer to your age to help you."

And when I asked yesterday if Thirteen would go shopping with me: "No, mom. This will end badly."

Huh. I went by myself today. This was a preemptive strike. I have a tentative date with a couple fashionistas who, yes, are my age, thank you very much, kids.

Let me explain how this is a venture so far outside my Comfort Zone as to be off the map. I tried to explain to my wonderful fashionista ladies last weekend: I have issues. Yes, these are the same issues that qualify me as poster child (or "Plucky Survivor" as I like to think of myself). They have to do with my body-image; they go WAY back. Not a few are directly about shopping. To be specific, changing booths, or as I think of them, the Tenth Circle of Hell.

When I was fifteen or so, I was able to stand up and step away from my wheelchair on wooden crutches. My bone infection had been "vanquished"; my family, Christian Science practitioner and I believed it had been HEALED! (Read: outlasted by a Plucky Child Survivor. But I didn't  know this until twenty years later.) 

This "healing" left me on crutches for eighteen months. Eventually my destroyed knee fused itself solid and I could walk on it. Meanwhile, I was a stranger in my post-puberty body. I'd been wiry, fast and strong at thirteen when the swelling in my leg shut down my life; now I was heavier, lame, depressed. I'd missed two years of school. My friends mostly shunned me. I detested my slow, awkward body. I tried to deny its existence as Christian Science dictated.

Meanwhile, the first place I had to go? The mall. Where I came face to face with my reflection in a fitting room mirror.

Shock? Panic attack? Despair? Damn right. I went home & curled in bed in a fetal position. I despised myself, my body, my failure to be healed as I'd been told I could. Lay there a couple days. Until I had to move...because I could. Had to get up. grab my crutches, get a lift to the barn so I could groom my crazy temperamental horse. Because I could move.

I struggled with my body for years. I had an eating disorder during high school, and binged and fasted as I watched the bathroom scale numbers like a Magic Eight ball that would determine my happiness on any given day. I used to walk compulsive laps through my house in the crazed need to force my rigid knee to bend or straighten. I stopped these behaviors on my seventeenth birthday when I threw away my last crutch--and gave in to the depression I've fought ever since. 

When friends look at me as though I'm just being stubborn, I feel twinges of that panic. Because it is so flipping complicated. And I have worked so damn hard to get to this point where I can express myself coherently. When I can write the hard truth of my life. When I might finally (finally!!) be recognized as a surviving voice for all the kids who didn't.

So this afternoon I drove to Ithaca. I paced myself; I was patient with myself; I cut myself a lot of slack when I was faced with the tubby middle-aged chick in the mirror. I forgave myself for being human. I was grateful to be human. Hell, a survivor! Alive, with the chance to represent others. And to speak at a conference.

At the checkout, the cashier said, "Ooh, these are nice."

I felt encouraged.  Yeah, this is unsettling, but it's a sign of my progress that I can describe it. Bring on the fashionistas.

But...cue George Thoroughgood, too. It's true, my preference: I shop alone...with nobody else...